I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!

The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.

The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.

Fresh vegetables
Fresh fruit
Nuts and seeds
Fish (not fried)
Wine (yessssssssssssssss!)
Olive oil
Coconut oil
Fresh herbs

The bad foods below are listed in order of greatest negative impact.

Canned fruit
Diet soda
Fried foods
Ice cream (noooooooooooo!)
Canned vegetables
Beef
Pasta
Soda

She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.

Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).

I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.

I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.

She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.

Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.

Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.

So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.

Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .

And we are back.

I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).

I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.

By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.

I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!

Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/

World PD Day 2020

First and foremost, I hope this post finds you and your families well and hunkered down as we wait out the COVID-19 pandemic. It is an unprecedented time in our lives and I have no idea how it will all end up but I have the cleanest hands in the neighborhood!

Today, April 11th, is World Parkinson’s Day, a part of Parkinson’s Awareness month. In past years, we have celebrated with Parkinson’s Disease walks and last year we moved our Pedaling for PD class out into the lobby of the YMCA to bring attention to PD and the need for exercise. But this year we can only act alone to raise awareness about PD as we stay in to prevent COVID-19.

This month I read a new book about Parkinson’s Disease – Ending Parkinson’s Disease, A Prescription for Action. The books co-authors show that the increasing numbers of PwP has made PD the fastest growing brain disorder in the world. The number of PwP’s has doubled from 3 million to over 6 million in 25 years and they predict it will double again to over 12 million by 2040. As a result they feel PD is a world wide pandemic.

The book is co-authored by four leading doctors and advocates for PD:

Ray Dorsey MD who directs the Center for Health + Technology at the University of Rochester. He has used telemedicine to improve care for individuals with Parkinson’s disease and I have participated in several clinical trials where he has pioneered the use of technolgy particularly cell phones and live video to improve diagnoses and treatment of PD.

Todd Sherer PHD is the Chief Executive Officer of The Michael J. Fox Foundation for Parkinson’s Research. Trained as a neuroscientist, he is responsible for the Foundation’s overall scientific and fundraising direction to speed treatment breakthroughs and a cure for Parkinson’s disease.

Michael S Okun MD is Chair of Neurology at the University of Florida. He established the Movement Disorder Clinic at the University of Florida bringing together Neurologists, Speech Therapists, Occupational Therapists and Physical Therapists for a complete evaluation of the patient. You can read my blog post about our experience when we went to the University of Florida for a second opinion here.

Bastiaan R Bloem, MD, PHD is professor of neurology and the director of the Centre of Expertise for Parkinson & Movement Disorders at Radboud University Medical Centre in Nijmegen, the Netherlands. In 2004, with Dr. Marten Munneke, he created ParkinsonNet, the largest integrated-care program for Parkinson’s patients.

The authors propose a PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies.

Prevent – They point out that stopping the use of chemical pesticides and solvents and recognizing the impact of head traumas would help to prevent PD and lead to a large reduction in newly diagnosed PwP world wide.

Advocate – They point out the need to educate the public about the worldwide Parkinson’s pandemic. The book discusses the campaigns to end or treat Polio, HIV, and Breast Cancer as examples.

Care – They discuss providing care for PwP’s including in home care by healthcare workers trained in caring for PD patients. They point out that care must be covered by health insurance including Medicare. In addition they discuss the need for each of us to take actions such as exercising to improve our own care. By the way, they have an excellent discussion about Pedaling for PD during the chapter about exercising to prevent and/or slow the progression of PD.

Treat – The final section deals with the need to take charge of the research process and make sure new treatments are fully funded. This would include new medications, new surgeries and improved methods of care for Parkinson’s Disease.

The book ends with a prescription for action listing 25 steps each of us can and should take to reduce the worldwide toll of this disease. The list includes banning paraquat and other harmful pesticides, eating like the Greeks, exercising, advocating for resources and policy changes, and providing reasonable pricing for PD medications.

The book is well written and includes many case studies and research references to support their plan for ending or at least slowing down the increasing number of Parkinson’s Disease diagnoses. It also lays out how to care for those of us that have already been diagnosed including supporting clinical trials that slow or reverse the progression of PD.

So, while you are home fighting off the COVID-19 pandemic, you might want to grab a copy of Ending Parkinson’s and read about the other pandemic we are fighting as PwP’s. You can find more information about the book at www.endingPD.org.

I am still working my way through the PD School 2020 lessons and will provide an update in my next post. In the meantime, stay safe and stay healthy!

PD School 2020 – Update

This will be a short blog post regarding the PD School being conducted by Dr Laurie Mischley which I wrote about in the last post. A few days ago I received the following message from Dr Mischely:

Hi Tom,

Yours was one of many requests I’ve received the past few days to make class #1 free.

Done. It is now free.

Thanks for helping spread the word!

Laurie

If you have or have not watched the first class, you now have an opportunity to not only watch it but forward that class to family members, friends, care givers and any other person you think could benefit from a good discussion about what it means to be diagnosed with PD.

As I mentioned in the last post, this lesson should be offered to all newly diagnosed Parkinson’s patients- it answers so many of the questions we have at that point but didn’t know enough to ask during that first meeting with the neurologist. The two links below take you to the overview lesson (was already free) and the orientation lesson which is now free.

http://pd-school.teachable.com/p/overview

http://pd-school.teachable.com/p/1-getting-oriented

I have completed lesson two “Dopamine Repletion” and lesson three “How Do We Know What We Know”. Both were excellent and I highly recommend them both. Here are a few of the highlights:

Lesson two – Dopamine Repletion – is an excellent overview on the drugs available, along with when is the best time to take them and avoid the protein from meals blocking the transfer of dopamine to the brain.

She utilizes the results of the ongoing CAM Study and other published research to support taking your levadopa/carbidopa with water mixed with vitamin C to provide additional stomach acid to speed up the breakdown of the pills.

In addition, she discusses the use of Fish Oil and Citicoline (both supplements) to reduce dyskinesia by improving the uptake of dopamine so you can reduce your overall dose.

At the end there is a brief discussion of Mucuna, a plant form of levadopa followed by a ‘guest lecturer’ who discusses the pluses and minuses of using Mucuna.

Lesson three – How Do We Know What We Know – discusses PD research from all directions. She was worried this would be the lesson no one watched, but it is another must see as she tackles traditional research, the placebo effect and more. Rather than try to recapitulate it all here I am going to just pull a few points from her summary at the end of the lesson:

-Physicians, patients, and researchers all describe/ define PD differently.

-Everyone says they want medicines that slow PD progression, but they don’t have a scale to measure progression.

-By time a patient is diagnosed, ability to significantly impact course may be compromised.

-We don’t know who is going to get PD (screening tests), we don’t know who is at greatest risk of progression, we don’t have a tool to measure progression, and we can’t agree on a definition.

-A shocking amount of researcher time goes to keeping one’s job. If you’re not bringing in grant money, you don’t get paid, so instead of just doing science, we spend our time courting the system. Novel ideas and innovation must swim against a significant current. Everyone wants so

As she wrapped up this lesson, she said she favors a ‘friendly competition’ among PD practitioners. If she is doing something right, doesn’t your neurologist need to know and if they are doing something right, she wants to know that too.

Sounds like a good idea to me.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.

First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.

The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.

It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)

We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.

We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.

Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.

And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Year: 2015

The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.

First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.

The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.

It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)

We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.

We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.

Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.

And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

May 25, 2015
It’s Clinical Trial Awareness Week

Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met. Amazing how life changes isn’t it?

Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder. But then what? You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure! But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug. Oh and that is the same problem with your second choice too!

Oh look, a soap box….

I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants. Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug. Presto, no longer eligible for many trials, at least while in the early progression of PD.

I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs. But, what if the combination produces a better result? Already many of us take two or more drugs to treat all of our symptoms and improve our quality of life. So here’s my idea..

Why not include some already medicated volunteers in the study design? For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex? It might require some tweaking of the dosage of the drugs but you have another 100 participants in your trial. Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

…..OK, off the soapbox.

Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!

As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
“It does not matter how slowly you go as long as you do not stop.” – Confucius

May 5, 2015
Walking for Parkinson’s Research

Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN. The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!
We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.

We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.

This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.

Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist. I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .

I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!

“It does not matter how slowly you go as long as you do not stop.” – Confucius

April 26, 2015

Lessons…Learned

World PD Day 2020

PD School 2020 – Update

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Year: 2015

The Busy Month of May

It’s Clinical Trial Awareness Week

Walking for Parkinson’s Research